"We explain to our patients that steroids will help to control the inflammation in the liver, but can cause a number of side effects in the short and longer term."

Autoimmune hepatitis is an immune-mediated liver disease that comes with a severe prognosis without treatment. Steroids were one of the first life-saving interventions, dramatically improving survival rates in early studies. However, steroid-related toxicity is a fundamental dilemma and significantly impacts health-related quality of life and well-being. Moving away from this demands a new era of targeted and personalized treatment solutions.

This is a challenge Emma Culver, MBChB DPhil FRCP, Consultant Hepatologist at the John Radcliffe Hospital in Oxford, knows all too well. Dr Culver leads the tertiary autoimmune and cholestatic liver disease service in Oxford, and her clinical and research practice spans areas including autoimmune hepatitis, primary biliary cholangitis, primary sclerosing cholangitis, and IgG4‑related disease.

"My interest in this field is personal as much as professional. I grew up watching my father manage decades of corticosteroid therapy for his autoimmune condition. I've seen first-hand the toll it takes, physically and psychologically. This is one of many reasons I am driven to seek better options."

Dr Culver combines clinical insights with research rigor, focusing on both the life‑saving benefits and the silent harm of long‑term immunosuppression.

The steroid imperative and its costs

Since the 1970s, systemic corticosteroids have been the cornerstone of autoimmune hepatitis treatment, heralding the first medical therapy to improve liver disease outcomes.

"We explain to our patients that steroids will help to control the inflammation in the liver, but can cause a number of side effects in the short and longer term. In the induction phase, many patients feel dramatically better, their jaundice improves, their aching and fatigue lifts, and their liver blood tests improve. This can be incredibly rewarding, and steroid-response supports the diagnosis, but the burden of side effects can overshadow those wins."

She emphasizes that there are both short- and longer-term complications of systemic steroid use:

"Patients can experience mood swings, hunger that is difficult to control, unexpected weight gain, and fluctuations in blood sugar. Over the longer-term, bone density declines and metabolic and cardiovascular risks increase. We are trading one set of problems for another. Steroid-sparing immunosuppressive medications are starting to reduce this burden, but many of our patients remain on long-term low dose corticosteroids alongside these to minimize the risk of disease flares and disease progression."

Measuring steroid-toxicity to drive innovation

"Objective measurements are the bedrock of change. If we can quantify corticosteroid-toxicity reliably, we can show the true human cost and create a real urgency for targeted therapies."

Since routine clinical notes often under-capture the nuanced spectrum of steroid harm, Dr Culver champions embedding the Glucocorticoid Toxicity Index (GTI) in both clinical trials and everyday practice.

"Working alongside Professor John Stone on IgG4-related disease, we've demonstrated how the GTI transforms patient narratives into data, revealing silent burdens and giving objective evidence to drive a change in mindset."

By tracking scores over time, clinicians can benchmark toxicity, drive research priorities, and build compelling evidence for investment in next-generation biological and immune-targeted therapies.

"The Glucocorticoid Toxicity Index gives us numbers we can act on, translating subjective complaints into an objective score. It's underused in clinical practice today, but it can change the conversation around personalized approaches and steroid tapering."

Empowerment, partnership, and progress

For Dr Culver, the path forward lies in empowering patients and integrating objective monitoring:

"Patient empowerment is paramount. When patients understand their disease, the treatment options available, the associated benefits and risks, then they have an opportunity to make informed decisions on their treatment path, rather than just comply."

She advocates for user‑friendly educational tools for physicians and patients; wallet-sized steroid emergency cards with details of indication, duration, and dose of steroids and instructions of what to do in a crisis, information packs with medication details and associated side effects, QR codes to patient-friendly resources, and dedicated clinical nurse specialist support and follow‑up to reinforce education and counselling. Digital platforms such as Sam (steroidsandme.com) enable patients to track side effects, making each clinic visit a truly shared decision‑making session.

Dr Culver concludes with a call to action:

"Empowered patients who can remind physicians about the importance of reducing and discontinuing steroids can help to be a driving force behind the development of next‑generation therapies."

Addressing steroid-toxicity is not optional; it is central to advancing care and improving the quality of life for autoimmune liver disease patients. Through informed partnerships, rigorous toxicity monitoring, and targeted drug development, we will hopefully be able to shift from temporary fixes to sustainable, disease‑modifying treatments.

Emma Culver, MBChB DPhil FRCP is a Consultant Hepatologist and Honorary Senior Lecturer at the Translational Gastroenterology and Liver Unit at the John Radcliffe Hospital and Nuffield Department of Clinical Medicine, University of Oxford, Oxford, United Kingdom. She is the Clinical Lead for the Immune-Mediated Liver Disease Service and Clinical Trials in autoimmune and cholestatic liver diseases in Oxford. She holds National and International Chair and Steering Committee positions in immune-mediated liver diseases. Her translational research focuses on immune mechanisms and fibrotic pathways in these conditions.